Tuesday, July 19, 2011

The View From Here...

Lucy is currently being transfused packed red blood cells. Our hope and prayer is that this will help her body function more optimally. Dr. R is never quick to transfuse, but after seeing our girl on Friday he said we need to do it.

It has actually been a quiet and peaceful afternoon. Sad but true, I am finding some peace amongst the chaos.

Oh how abnormal our normal is…

Thank you for all of your thoughts and prayers. Things are going as well as can be expected. I am looking forward to seeing our baby girl looking a little pinker.

4 comments:

I just read your last post about Lucy having autonomic storms...that's exactly what they've been saying my daughter Reagan is doing. It's frustrating for us, because we have no idea how to help her! Hers come and go in a very cyclical nature. She'll have days where she's perfect and couldn't look or feel better and then she'll have several days where she's absolutely miserable and cries nonstop, her heartrate is through the roof, she throws up, can't sleep...it's horrible. I'm curious what your doctor is saying. We haven't been successful in finding any help for Reagan yet. It's been very stressful!

(((hugs))) I also read your last post just now, poor baby. Sorry she's struggling so right now. Jack also goes through many days where all his functions are out of wack, right now his sats are really dipping--but i know much milder than Lucys. I just hate to see her fighting more and more issues, she really is an amazing little girl. Praying the transfusion helps, and shes feeling better soon. You've all been through so much this year, thinking about you and your family always, BIG hugs.Heidi and Jack.

Instagram

FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!